Share Your Story
Hearing about others' experiences can be helpful when dealing with death and bereavement. Do you have a personal experience that you'd feel comfortable sharing with the campaign? If so, let us know...
The look in her eyes when she opened them and realized I was the one standing at her bedside to welcome her into the morning melted my heart every time. I believe my mother’s almost childlike look of joy on those mornings reflected a combination of happiness and wonder: happiness to see me, because that meant we would be spending another mother-daughter day together; and wonder – or perhaps relief – to be awakening to another day at all, because she knew her days were numbered.
My eternally wonderful mother was terminally ill with metastatic lung cancer.
I wonder how many new cancer diagnoses in 2012 will carry with them the term “terminal". It’s certainly not a word anyone wants to hear. I heard it in September 2008, when my father delivered the unexpected and earth-shattering news that my 73-year-old mother’s nagging vision problems were a result of tumours in her brain that were metastases from primary cancer in her lungs. An MRI had found the brain lesions, and an x-ray confirmed the lung cancer. The disease was incurable and terminal.
The news sent me into shock and a period of intense grief – anticipatory grief; I began immediately to anticipate the day when my mother would no longer be part of my life and when my father would be a widower utterly unequipped to cope in a world without the woman with whom he had fallen in love at first sight in 1956. This reaction – anticipating and grieving a loss before it occurs – is a natural response to news that a life is going to end much sooner than anticipated.
But wait: a terminal diagnosis does not terminate life!
I realized this during a sleepless night 48 hours after my mother’s diagnosis. Lying in bed wondering what I was supposed to do, it struck me: although I could do nothing to stop her from dying, there was much I could – and must – do to help her keep living. I did not want my mother to stop living while she waited to die.
I got out of bed the next day determined to inject as much living into my mother’s life as possible for as many weeks, months, or – if we were lucky – years she might have left. Her diagnosis did not carry a termination date, and so my family decided to welcome each new day and assume there would be many more new days ahead. We resolved to stay in the moment rather than anticipate what we now knew the future would bring. We committed to live both fully and joyfully until the very end.
We found many ways to inject living into dying. Above all, perhaps, we looked forward to each day as one that would bring new possibilities rather than as a day that would bring my mother one day closer to her death. We used a calendar to look ahead, not to check off days she had managed to survive. We did not stop making plans. We planned tomorrow, next week, and next month. And the longer she lived, the longer our planning horizon became. There was still so much to look forward to, we believed. So much more living to do.
My mother told us she went to bed at the end of each day feeling deeply thankful. And she fell asleep imagining what happiness might be in store for her the next day. I’d like to believe that she frequently dozed off looking forward to waking up and finding me standing over her bed, ready to begin another mother-daughter day. Another day of living, laughing, loving, and looking forward to what was still to come.
One year and one day after her diagnosis, my mom, Nancy Sachsse, succumbed to her disease. She died peacefully at home in September 2009, surrounded by those who loved her to and through death and by members of our hospice team, who had grown to love her, too.
Two and a half months later, our story of love and loss began taking shape on paper. My grief clearly needed an outlet, and words began to flow from my broken heart through my fingers into a manuscript that I finished in time to give to my father for Christmas, his first without his beloved wife of 52 years. My book, entitled WHEN ALL THAT’S LEFT OF ME IS LOVE (Tate Publishing, Aug. 2011), focuses, as I did with unwavering will during the last year with my mother, on ways to ensure each new day would be one she’d look forward to because of the joy it could bring, rather than one to fear because it would mean she was one day closer to her final day.
Although the book is not a how-to guide, it does provide many examples of little things that make a big difference. And while it’s a very personal story, reader reactions are suggesting strongly that its themes are quite universal.
For those who are facing death, grieving loss, or merely interested in experiencing vicariously how wonderful life can be after the dreaded word “terminal” has been uttered, this story may be a source of reassurance, comfort, and inspiration. I hope you will want to read it. You will meet a woman of tremendous grace and courage and a family determined to enjoy life while waiting for death.
For more info: www.lindacampanella.tateauthor.com
The Dying Matters Coalition is led by the National Council for Palliative Care,
the umbrella charity for end of life care in England, Wales and Northern Ireland.
Freephone 08000 21 44 66